"Issues with my referral"

In February 2019 I attended Hairmyres Respiratory Department for an Exercise test (CPET), as I am still having difficulty breathing when walking up hills or on exertion, following diagnosed Pulmonary Embolism across both lungs in 2017. 

Patrick who carried out the test was very patient with me, explained everything thoroughly before starting, and afterwards was able to talk me through my results.  He explained that although a few of the results could be better, they were still within normal limits, however one in particular was significantly lower than the bottom range they look for.  He was going to send my results back to my consultant so that it could be investigated further, as he wasn't able to give an obvious reason for the result.  He said that in normal circumstances it would point to chronic de-conditioning, but from my obvious health and fitness levels he wouldn't say that's what it would be in this case.

Patrick was kind enough to write down a phone number for a private company for me as apparently this is who my consultant works for.  Until he gave me this I had no idea it was a separate company I was being seen by and not direct with NHS consultants.

In May, I called the private company to enquire when my next consultant appointment would be as I still hadn't heard anything 3 months after my test was carried out.  The staff member I spoke with checked my records and informed me that the consultant had signed me off.

I explained what I had been told after my CPET test, and was advised to go back to my local GP for more advice.  I told the staff member I wasn't willing to do that, as the consultant had signed me off without discussing with me the results of my test, which I was told was abnormal.  Nor had the private company ever written to me to say that the consultant had signed me off.  I insisted that the staff member spoke to the consultant to relay my concerns and to have another appointment booked in.  They said they would email the consultant and call me back.  I had to call the private company the following week to chase this response myself.

I was given an appointment in June with a consultant, and at this appointment it was agreed the possibility of residual blood clots on my lungs so would refer me for a VQ scan.  

In August I spoke to the private company to chase up the appointment and was told i'd need to speak to Hairmyres respiratory dept myself to find out what was happening.

I called Hairmyres and the staff member I spoke with was very helpful.  Although they didn't have the information to hand as its a private consultant i'm with, they offered to look into it and call me back.  The staff member called back within an hour as promised, and advised the VQ had been rejected as Lanarkshire no longer offer this scan, and the private company would need to refer me to a Glasgow hospital for this.  I was told that this staff member's manager would contact the provate company, but I also said I would call them to advise.

I spoke to the private company again and explained what I had been told, and they said they'd email the consultant to let them know and they would put in a referral to Glasgow but they would need to send it to Lanarkshire first.  I don't understand why that is, but they said it had to go via lanarkshire but with a request for Glasgow hospital. The staff member I spoke to also had some less than complimentary things to say about Lanarkshire health board, which i found highly unprofessional.

I have stated to them how unhappy I am with the service level I have received via the private company over various issues, and that I am not happy I will be placed at the back of the queue for this test again.  I asked for it to be put through as an urgent referral, as if I hadn't called to chase the appointment for the scan, I don't believe that the private company would have followed it up, considering they didn't have the courtesy on the previous occasion to write to me to say the consultant was signing me off. 

This private company also couldn't provide me with standard waiting times for the NHS, they said this isn't something they have but could look into for me.  

My concern for my health is my main issue.  I was on thinners for just over 12 months after being diagnosed with PE, but my symptoms have never fully dissipated and have gradually become worse.  I worry that my health deteriorates further, and something that could be picked up at the appropriates tests isn't because of these delays.

I look forward to your response on my concerns.